Louise
@louiseathome.bsky.social
Patiently (mostly) persevering with pacing #LongCovid #pwME #MECFS #POTS 🏳️🌈😷
cats • science • cats • FPL • cats
cats • science • cats • FPL • cats
Reposted by Louise
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
August 6, 2025 at 6:24 PM
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
Reposted by Louise
🚨 Mythbusting #LongCovid with Dr Amir Khan🚨
Long Covid is real. It’s serious. And it’s affecting millions.
On #LongCovidAwarenessDay, #DrAmirKhan joins us to bust harmful myths.
Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.
Long Covid is real. It’s serious. And it’s affecting millions.
On #LongCovidAwarenessDay, #DrAmirKhan joins us to bust harmful myths.
Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.
March 15, 2025 at 9:12 AM
🚨 Mythbusting #LongCovid with Dr Amir Khan🚨
Long Covid is real. It’s serious. And it’s affecting millions.
On #LongCovidAwarenessDay, #DrAmirKhan joins us to bust harmful myths.
Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.
Long Covid is real. It’s serious. And it’s affecting millions.
On #LongCovidAwarenessDay, #DrAmirKhan joins us to bust harmful myths.
Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.
Reposted by Louise
Long COVID, ME/CFS, and Post-Infectious Syndromes: A year-long program from Bateman Horne Center and University of Utah! Designed for medical professionals, encouraging your HCPs to join is a step toward integrating these subjects into med school curricula. Please share to spread the word 🙏🏻(1/4)
December 30, 2024 at 2:09 AM
Long COVID, ME/CFS, and Post-Infectious Syndromes: A year-long program from Bateman Horne Center and University of Utah! Designed for medical professionals, encouraging your HCPs to join is a step toward integrating these subjects into med school curricula. Please share to spread the word 🙏🏻(1/4)
Reposted by Louise
I'm a teacher, so I take work home with me.
These lines - no. They soon fade.
But in the final week of term, I don't want to bring home #ChristmasFever
Usually I write about how easy it is to wear a mask. But this🧵is about how hard it is, and how to understand why others don't mask.
These lines - no. They soon fade.
But in the final week of term, I don't want to bring home #ChristmasFever
Usually I write about how easy it is to wear a mask. But this🧵is about how hard it is, and how to understand why others don't mask.
December 16, 2024 at 10:26 PM
I'm a teacher, so I take work home with me.
These lines - no. They soon fade.
But in the final week of term, I don't want to bring home #ChristmasFever
Usually I write about how easy it is to wear a mask. But this🧵is about how hard it is, and how to understand why others don't mask.
These lines - no. They soon fade.
But in the final week of term, I don't want to bring home #ChristmasFever
Usually I write about how easy it is to wear a mask. But this🧵is about how hard it is, and how to understand why others don't mask.
Reposted by Louise
SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME.
youtu.be/FX6Fk9-WSmo?...
youtu.be/FX6Fk9-WSmo?...
SKY News Karen Gordon
YouTube video by Broken Battery
youtu.be
December 9, 2024 at 9:49 PM
SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME.
youtu.be/FX6Fk9-WSmo?...
youtu.be/FX6Fk9-WSmo?...
Reposted by Louise
Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades.
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
December 1, 2024 at 9:00 AM
Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades.
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
Great to hear more about the #ThereForME campaign. Thanks for all you’re doing.
Yesterday I spoke with @davetuller1.bsky.social about our #ThereForME campaign.
I’ve done lots of short interviews - so it was a real pleasure having space to talk at length about my own experiences, how the campaign has developed and what comes next. Thanks David! 🙏
virology.ws/2024/11/21/t...
I’ve done lots of short interviews - so it was a real pleasure having space to talk at length about my own experiences, how the campaign has developed and what comes next. Thanks David! 🙏
virology.ws/2024/11/21/t...
Trial By Error: Interview with Karen Hargrave, Co-Founder of #ThereForME | Virology Blog
By David Tuller, DrPH Karen Hargrave is co-founder of an advocacy campaign called #ThereForME, which was launched this past summer to draw public awareness ...
virology.ws
November 22, 2024 at 5:00 PM
Great to hear more about the #ThereForME campaign. Thanks for all you’re doing.
Reposted by Louise
We are now on Bluesky! 🦋
CrunchME is a patient-led project mapping the scientific, tech, advocacy and medical ecosystem around solving #MECFS, #LongCovid and other IACCs 💙
CrunchME is a patient-led project mapping the scientific, tech, advocacy and medical ecosystem around solving #MECFS, #LongCovid and other IACCs 💙
November 21, 2024 at 4:27 PM
We are now on Bluesky! 🦋
CrunchME is a patient-led project mapping the scientific, tech, advocacy and medical ecosystem around solving #MECFS, #LongCovid and other IACCs 💙
CrunchME is a patient-led project mapping the scientific, tech, advocacy and medical ecosystem around solving #MECFS, #LongCovid and other IACCs 💙
Reposted by Louise
Hello #Bluesky 🦋
Great to be here 💙
#LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies
Since we are new here come say hi 👋
You can find out more about us 👇
bio.site/longcovidphy...
Great to be here 💙
#LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies
Since we are new here come say hi 👋
You can find out more about us 👇
bio.site/longcovidphy...
LONG COVID PHYSIO - Bio Site
LONG COVID PHYSIO · Peer support. Education. Advocacy. · Share your websites, products, social pages, and more, all in one link with Bio Sites from Unfold.
bio.site
November 14, 2024 at 8:02 AM
Hello #Bluesky 🦋
Great to be here 💙
#LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies
Since we are new here come say hi 👋
You can find out more about us 👇
bio.site/longcovidphy...
Great to be here 💙
#LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies
Since we are new here come say hi 👋
You can find out more about us 👇
bio.site/longcovidphy...
Reposted by Louise
So great to connect with people in the #ChronicIllness community. Here’s our animation on energy limiting conditions. youtu.be/AtdpgiNs_xg?... Animation by @stacybias.bsky.social & @fourfooteleven.bsky.social Research with @alisonallam.bsky.social @thelrm.bsky.social #NEISVoid #ME/CFS #LongCovid
Disbelief and Disregard in Health and Social Care for people with Energy Limiting Conditions
YouTube video by Challenging Disbelief and Disregard
youtu.be
November 19, 2024 at 6:55 PM
So great to connect with people in the #ChronicIllness community. Here’s our animation on energy limiting conditions. youtu.be/AtdpgiNs_xg?... Animation by @stacybias.bsky.social & @fourfooteleven.bsky.social Research with @alisonallam.bsky.social @thelrm.bsky.social #NEISVoid #ME/CFS #LongCovid
Reposted by Louise
Our wonderful @oonaghcousins.bsky.social took the reins for today’s #ThereForME update.
Feat. news from across the continent, plus some very poignant reflections on her story and how it is told.
open.substack.com/pub/therefor...
Feat. news from across the continent, plus some very poignant reflections on her story and how it is told.
open.substack.com/pub/therefor...
Campaign Update #11: #ThereForME across the continent
From #ThereForME HQ, to Rome and Switzerland
open.substack.com
November 19, 2024 at 9:31 AM
Our wonderful @oonaghcousins.bsky.social took the reins for today’s #ThereForME update.
Feat. news from across the continent, plus some very poignant reflections on her story and how it is told.
open.substack.com/pub/therefor...
Feat. news from across the continent, plus some very poignant reflections on her story and how it is told.
open.substack.com/pub/therefor...
Reposted by Louise
I am only at 81 followers 🥲 Can you guys re-post this so I can reconnect with more people here. It's me, Ramy 👋
November 13, 2024 at 4:41 PM
I am only at 81 followers 🥲 Can you guys re-post this so I can reconnect with more people here. It's me, Ramy 👋
Reposted by Louise
Join us for a webinar focused on Long COVID & IACC Care. As the landscape of clinical trials and treatments evolves, it’s crucial to understand what steps can be taken to enhance patient care.
📅 November 20
🕚 11:30 AM - 12:45 PM PST
⏳ 60 minutes + 15 mins for Q&A
Register Now: ow.ly/rogL50U6AAA
📅 November 20
🕚 11:30 AM - 12:45 PM PST
⏳ 60 minutes + 15 mins for Q&A
Register Now: ow.ly/rogL50U6AAA
November 18, 2024 at 7:54 PM
Join us for a webinar focused on Long COVID & IACC Care. As the landscape of clinical trials and treatments evolves, it’s crucial to understand what steps can be taken to enhance patient care.
📅 November 20
🕚 11:30 AM - 12:45 PM PST
⏳ 60 minutes + 15 mins for Q&A
Register Now: ow.ly/rogL50U6AAA
📅 November 20
🕚 11:30 AM - 12:45 PM PST
⏳ 60 minutes + 15 mins for Q&A
Register Now: ow.ly/rogL50U6AAA
Reposted by Louise
PolyBio is excited to begin sharing our #LongCovid, #MECFS and #Lyme+ research on #BlueSky! If you’re still getting to know us, we lead the #LongCovid Research Consortium: a global collaboration between top research teams to comprehensively study LC, focusing on SARS-CoV-2 persistence in tissue.
November 18, 2024 at 1:02 AM
PolyBio is excited to begin sharing our #LongCovid, #MECFS and #Lyme+ research on #BlueSky! If you’re still getting to know us, we lead the #LongCovid Research Consortium: a global collaboration between top research teams to comprehensively study LC, focusing on SARS-CoV-2 persistence in tissue.
Reposted by Louise
My app for finding 🦋 accounts you may want to follow has had a make-over: it now displays names and bios, and allows adding an "app password" for direct follow buttons in the listing
bsky-follow-finder.theo.io
bsky-follow-finder.theo.io
Bluesky Network Analyzer
Find accounts that you don't follow (yet) but are followed by lots of accounts that you do follow.
bsky-follow-finder.theo.io
November 12, 2024 at 10:51 PM
My app for finding 🦋 accounts you may want to follow has had a make-over: it now displays names and bios, and allows adding an "app password" for direct follow buttons in the listing
bsky-follow-finder.theo.io
bsky-follow-finder.theo.io
Reposted by Louise
📌 I've made a page for some key recent scientific papers for #MECFS and #LongCovid. Nearly all have accessible PDF links (open-access or via PubMedCentral).
Aiming to keep updated as new papers drop, but with limited numbers.
www.ddp.nz/me-cfs-lc/re...
Aiming to keep updated as new papers drop, but with limited numbers.
www.ddp.nz/me-cfs-lc/re...
ME/CFS and LC References
www.ddp.nz
November 16, 2024 at 7:15 PM
📌 I've made a page for some key recent scientific papers for #MECFS and #LongCovid. Nearly all have accessible PDF links (open-access or via PubMedCentral).
Aiming to keep updated as new papers drop, but with limited numbers.
www.ddp.nz/me-cfs-lc/re...
Aiming to keep updated as new papers drop, but with limited numbers.
www.ddp.nz/me-cfs-lc/re...
Reposted by Louise
🥳 @drclairetaylor.bsky.social is now on Bluesky
There's a fab growing community here so please give her a welcome and a follow 💙
There's a fab growing community here so please give her a welcome and a follow 💙
October 27, 2024 at 7:13 AM
🥳 @drclairetaylor.bsky.social is now on Bluesky
There's a fab growing community here so please give her a welcome and a follow 💙
There's a fab growing community here so please give her a welcome and a follow 💙
Reposted by Louise
Thank you to the amazing @swastrosarah.bsky.social and @binitakane.bsky.social for speaking so eloquently on the bbc this morning about severe #ME and how Maeve was failed by the health system
This concise description sums up why conditions like #MECFS and #longcovid are not just ‘chronic fatigue’
This concise description sums up why conditions like #MECFS and #longcovid are not just ‘chronic fatigue’
September 28, 2024 at 8:40 AM
Thank you to the amazing @swastrosarah.bsky.social and @binitakane.bsky.social for speaking so eloquently on the bbc this morning about severe #ME and how Maeve was failed by the health system
This concise description sums up why conditions like #MECFS and #longcovid are not just ‘chronic fatigue’
This concise description sums up why conditions like #MECFS and #longcovid are not just ‘chronic fatigue’
Reposted by Louise
We are so excited to announce Long COVID Essentials, a new collaboration with The Sick Times. Over the next several months, we’ll be publishing 30+ Long COVID resource sheets that provide foundational information about navigating
#LongCOVID. longcovidjustice.org/long-covid-essentials
#LongCOVID. longcovidjustice.org/long-covid-essentials
Introducing Long COVID Essentials, a new resource series - The Sick Times
We are excited to announce Long COVID Essentials, a new collaboration between The Sick Times and Long COVID Justice. Over the next several months, we’ll be publishing over 30 resource sheets that prov...
bit.ly
September 16, 2024 at 6:07 PM
We are so excited to announce Long COVID Essentials, a new collaboration with The Sick Times. Over the next several months, we’ll be publishing 30+ Long COVID resource sheets that provide foundational information about navigating
#LongCOVID. longcovidjustice.org/long-covid-essentials
#LongCOVID. longcovidjustice.org/long-covid-essentials
Reposted by Louise
BBC Breakfast - #LongCovid & #MECFS includes our Ambassador Oonagh Cousins & Dr Binita Kane:
“Nearly 2.2m in UK suffering from #LongCovid …for scale of the problem we’ve not seen investment that this needs. There’s been a lot of promises, reports but we need action”
www.youtube.com/watch?v=Auqt...
“Nearly 2.2m in UK suffering from #LongCovid …for scale of the problem we’ve not seen investment that this needs. There’s been a lot of promises, reports but we need action”
www.youtube.com/watch?v=Auqt...
BBC Breakfast ME/CFS and Long Covid
YouTube video by Broken Battery
www.youtube.com
August 27, 2024 at 9:06 AM
BBC Breakfast - #LongCovid & #MECFS includes our Ambassador Oonagh Cousins & Dr Binita Kane:
“Nearly 2.2m in UK suffering from #LongCovid …for scale of the problem we’ve not seen investment that this needs. There’s been a lot of promises, reports but we need action”
www.youtube.com/watch?v=Auqt...
“Nearly 2.2m in UK suffering from #LongCovid …for scale of the problem we’ve not seen investment that this needs. There’s been a lot of promises, reports but we need action”
www.youtube.com/watch?v=Auqt...
youtube.com/@iimeinfo?si... 16th Invest in ME Research International ME Conference 2024 #MECFS
InvestinME Research
UK Charity Invest in ME - Research
youtube.com
August 11, 2024 at 7:13 AM
youtube.com/@iimeinfo?si... 16th Invest in ME Research International ME Conference 2024 #MECFS
Reposted by Louise
Hey, #NEISvoid!
If you're reading this, reply to connect with the Twitter exodus who are in the disability advocacy space.
Use a "pushpin" icon and then check your replies to find this post again and follow new folks who reply.
And share! Let's keep this post circulating as a way to reconnect.
If you're reading this, reply to connect with the Twitter exodus who are in the disability advocacy space.
Use a "pushpin" icon and then check your replies to find this post again and follow new folks who reply.
And share! Let's keep this post circulating as a way to reconnect.
There's an interesting problem in digital preservation, which is that preservation only exists actively. Only the things you actively move to new formats, survives.
Community is probably the same way: it has to be actively maintained in order to outlive whatever spot it's currently in.
Community is probably the same way: it has to be actively maintained in order to outlive whatever spot it's currently in.
June 20, 2024 at 7:41 PM
Hey, #NEISvoid!
If you're reading this, reply to connect with the Twitter exodus who are in the disability advocacy space.
Use a "pushpin" icon and then check your replies to find this post again and follow new folks who reply.
And share! Let's keep this post circulating as a way to reconnect.
If you're reading this, reply to connect with the Twitter exodus who are in the disability advocacy space.
Use a "pushpin" icon and then check your replies to find this post again and follow new folks who reply.
And share! Let's keep this post circulating as a way to reconnect.
Reposted by Louise
🚨 New campaign - #ThereForME - led by patients and carers calling for an NHS that's there for people with ME and #LongCovid. It's been endorsed by 15 organisations including Long Covid Support.
Go to linktr.ee/ThereForME to read the report and see how you can lend your support.
Go to linktr.ee/ThereForME to read the report and see how you can lend your support.
July 23, 2024 at 8:33 AM
🚨 New campaign - #ThereForME - led by patients and carers calling for an NHS that's there for people with ME and #LongCovid. It's been endorsed by 15 organisations including Long Covid Support.
Go to linktr.ee/ThereForME to read the report and see how you can lend your support.
Go to linktr.ee/ThereForME to read the report and see how you can lend your support.
#SevereMEDay
- 1 in 4 people with ME have severe ME, leaving them housebound or bedbound
- People with severe ME often require full-time care
- ME is a neurological, energy-limiting disease
- Severe ME requires specialist medical treatment and can be fatal.
www.actionforme.org.uk/news/severe-...
- 1 in 4 people with ME have severe ME, leaving them housebound or bedbound
- People with severe ME often require full-time care
- ME is a neurological, energy-limiting disease
- Severe ME requires specialist medical treatment and can be fatal.
www.actionforme.org.uk/news/severe-...
Severe ME Day 2024
08 August 2024 marks Severe ME Day; a day which is dedicated to people with severe Myalgic Encephaloymelitis.
www.actionforme.org.uk
August 8, 2024 at 9:17 AM
#SevereMEDay
- 1 in 4 people with ME have severe ME, leaving them housebound or bedbound
- People with severe ME often require full-time care
- ME is a neurological, energy-limiting disease
- Severe ME requires specialist medical treatment and can be fatal.
www.actionforme.org.uk/news/severe-...
- 1 in 4 people with ME have severe ME, leaving them housebound or bedbound
- People with severe ME often require full-time care
- ME is a neurological, energy-limiting disease
- Severe ME requires specialist medical treatment and can be fatal.
www.actionforme.org.uk/news/severe-...